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I have nerve damage. Update: Let me tell you me tale of woe #230

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  • Original Poster

    To answer your questions:
    No, nothing like this runs in my family.
    I don't know what the original injury was. No idea. The only time I was in the hospital before all this was 20 years ago when I broke a leg skiing. Other than colds, I had been completely healthy before this. Then I got Endometriosis and the nerve problems showed up about halfway through my treatment for that. We thought they were related until the pain started in my leg.
    I was really grumpy last night.

    I did get these new pain patches from my doc. They are called Lidoderm and they are sticky pads with Lidocaine on them. They are only FDA approved for Shingles so some insurance companies might not allow them for "other" pain. Mine did, and I'm trying them out now.

    Originally posted by Equine Adhesive View Post
    Farethee- WOW. Thank-you for sharing your story. It is very inspirational, what you have accomplished. You are a light to us all.

    GotGait - you've really become a pin cushion, haven't you?! What was your original injury? Do neuro issues run in your family? My heart is with you. You are right, a lot of people do not understand chronic pain. What makes it worse is that those people seem to avoid suffering people. Why? Why can't people be more conscientious and empathetic? It seems likely they are afraid of something. Which just makes your life that much harder. Count me in as someone who is here to listen and support. Focusing on the positive is important, whining is necessary, and not making progress is devastating. I hope you are making progress, even if it is small. Stories like Farethee's should give us all inspiration, no?
    Last edited by GotGait; Jul. 28, 2012, 04:38 PM.
    You are what you dare.

    Comment


    • Best of luck on this challenging journey. I too, have nerve damage in BOTH arms and one leg! The leg is the worst-from a 2009 car accident. 3 nerves involved. I use the lidoderm patches too from time to time. Ice is my best friend. I want to tell you about another element in my arsenal-here is a link:
      http://www.amazon.com/Chili-Brand-Ca.../dp/B002NNJKDA

      They are really intense, more like a twitch than a pain reliever b/c they get so hot. They stay on for days unlike the lidoderm, (which I wrap on with vet rap)
      and will get extra activated if they get wet, so don't shower with them on.

      Yes, all these body challenges make for a very complicated life in terms of social, employment, etc-horses too. One thing it has led to is a very deep relationship with my horse because of all the visits we have that are not centered around riding. So many times I am lucky just to drive out there to see him, let alone ride.

      I have had quite a few other body challenges that involve tendons, bones, ligaments, but I gotta say, the nerve damage is the worst and the doctor's response to that is so archaic. Breath, breath, breath. Stretch, stretch, stretch. Be careful with meds. Best of luck to you!

      Comment

      • Original Poster

        I'm wearing Vet Wrap right now! It's hot pink.
        I haven't had any luck with ice or heat. I haven't had too bad a day today what with the lidocaine patches and narcotics. I was even able to ride out to see my horse. She missed me.
        The worst days are when the nerve in my leg starts shocking me. I don't know how else to describe it, but it's like feeling a shock in my brain. There's nothing I can do to stop it except wait it out. Usually lasts about 20-30 minutes.
        Good luck to you as well!

        Originally posted by islandrider View Post
        Best of luck on this challenging journey. I too, have nerve damage in BOTH arms and one leg! The leg is the worst-from a 2009 car accident. 3 nerves involved. I use the lidoderm patches too from time to time. Ice is my best friend. I want to tell you about another element in my arsenal-here is a link:
        http://www.amazon.com/Chili-Brand-Ca.../dp/B002NNJKDA

        They are really intense, more like a twitch than a pain reliever b/c they get so hot. They stay on for days unlike the lidoderm, (which I wrap on with vet rap)
        and will get extra activated if they get wet, so don't shower with them on.

        Yes, all these body challenges make for a very complicated life in terms of social, employment, etc-horses too. One thing it has led to is a very deep relationship with my horse because of all the visits we have that are not centered around riding. So many times I am lucky just to drive out there to see him, let alone ride.

        I have had quite a few other body challenges that involve tendons, bones, ligaments, but I gotta say, the nerve damage is the worst and the doctor's response to that is so archaic. Breath, breath, breath. Stretch, stretch, stretch. Be careful with meds. Best of luck to you!
        You are what you dare.

        Comment


        • Yes, shock is the word I used-blinding, nauseating, dizzying, horrendous shock which brought me to the ground or clinging to walls. But, there are a few things you can do, which would be good to run by a well-informed healer of your choice to make sure you are ready: learn to do nerve stretches, strengthen the tendons and ligs around your sacrum, get an MRI if you haven't yet-(sorry I didn't read through all the posts)-during the "shocks"
          just breath as deeply as you can-worse than labor pains, mine anyway!
          Also, a real good tip from my dr-I don't tolerate pain meds, so only took a very low-dose nsaid but this is good advice for prescription drugs, too-take a tums or some kind of tummy coating along with your meds-helps keep the gut function happy as those meds can wreak havoc in other areas i.e. liver, digestion, etc.
          Again best wishes and educate yourself as best you can so you aren't a long term victim of this! I'm still dealing with it all after 3 years (arms for 13) but
          have been told I'm lucky I can even walk after that accident. So-every minute upright from here out is cake, and every minute with horse is cake with double icing !

          Comment

          • Original Poster

            This morning I felt good enough to give my horse a bath. It's been so hot here, and the horses stand in their stalls and sweat. I guess the cold water felt pretty good since she even let me squirt her face. I feel pretty rundown now and need another lidocaine patch, but it was nice to get something done. I remember when stuff like this was no big deal.
            You are what you dare.

            Comment


            • I don't know much about nerve damage, but it sounds like you have had a very trying ride.

              I wish you the very best. Never give up. My grandfather had nerve damage in his toes. He tried to have it fixed, ended up on the long end of a 6 month hospital stay including C-Dif which almost killed him. This all sounds horrific, but he's with us and chipper today. He's down 3/4 of a leg, but he's with us and has a new lease on life. He's a real trooper being in his late 80's.

              I will keep you in my prayers.
              http://ashleighmartin.blogspot.com

              This is an estoppel free zone

              Comment

              • Original Poster

                Ok, well here I am afraid to go to sleep. Tomorrow is another surgery - this will be #8. I am always worried the night before, thinking this may be my last night on earth. Melodramatic, but there's always that little fear in the back of my mind and I want to leave everyone knowing they were loved. I know this surgery will be fine, just like all the others, but I'm still reluctant to sleep. It just makes tomorrow come faster.

                Tomorrow, I will lose my genitofemoral nerve. I'm hoping that once it is gone, I will be able to ride again, but I don't know. My leg is still not great, but maybe they are feeding off each other and my leg will get better as well.
                I would like to sit on my horse before winter comes.
                I was told by my doctor that I could never ride again, but pffft... yeah right.

                I've already hugged my horse "goodbye" today and am mentally preparing myself. I know I should really get some sleep.
                You are what you dare.

                Comment


                • Oh, Gait.

                  Sending you best wishes, healing thoughts, and tough cookie vibes for this surgery.

                  You've been through a ton, and though I don't think I've posted previously, I've been reading. You are going to do great, and I hope this one has the outcome you so much deserve.

                  We WILL hear from you as soon as you are able to update. Sleep tight and know we are pulling for great things with this one.
                  "Aye God, Woodrow..."

                  Comment

                  • Original Poster

                    Thanks, this forum has been cathartic for me. I will post an update when I'm back home.
                    You are what you dare.

                    Comment


                    • Thinking of you
                      I wasn't always a Smurf
                      Penmerryl's Sophie RIDSH
                      "I ain't as good as I once was but I'm as good once as I ever was"
                      The ignore list is my friend. It takes 2 to argue.

                      Comment


                      • Been praying for you this morning. Hope all goes well <3
                        <>< Sorrow Looks Back. Worry Looks Around. Faith Looks Up! -- Being negative only makes a difficult journey more difficult. You may be given a cactus, but you don't have to sit on it.

                        Comment


                        • I just found your thread.

                          What a trying journey you have been through. You are one brave, tough cookie too.

                          Let us know how it went today.


                          (((cyber hugs)))

                          Comment


                          • i dont own a horse but i love to ride and hang out. i keep telling myself if the day comes that im too 'lame' to ride then i will make absolutely sure to keep spending time around horses for the rest of my life.

                            Comment


                            • Originally posted by HannahsMom7 View Post
                              GotGait - I'm so sorry to hear. I have a fused neck and most likely will never ride again either. I was looking for a horse for me when the accident
                              I have fused neck but still riding. Some days more pain ....when bad I ride a friend's gaited horse.

                              Comment


                              • I will be thinking of you and hoping you finally have pain relief.
                                Brothers and sisters, I bid you beware
                                Of giving your heart to a dog to tear.
                                -Rudyard Kipling

                                Comment


                                • Hope this is the one that does the trick. Jingles for a complete recovery this time.
                                  McDowell Racing Stables

                                  Home Away From Home

                                  Comment

                                  • Original Poster

                                    I am doing pretty good today. I only have 4 little holes as it was robot assisted surgery. I won't know if it worked for awhile. For some reason, even though the nerve is gone the brain thinks it's still there and the pain sticks around until brain decides the nerve is missing. Sometimes it doesn't - I might end up with phantom pain. But, the prior surgery where 2 nerves were removed worked, so I'm hoping this one will too. I still have leg pain, but we are slowly whittling away at it. I'm much better than I was this time last year.
                                    You are what you dare.

                                    Comment


                                    • Glad to hear things are looking up
                                      I wasn't always a Smurf
                                      Penmerryl's Sophie RIDSH
                                      "I ain't as good as I once was but I'm as good once as I ever was"
                                      The ignore list is my friend. It takes 2 to argue.

                                      Comment

                                      • Original Poster

                                        I finally got around to getting temporary handicapped hang tags. I feel officially broke down now.
                                        I can't tell if this latest surgery worked, but at least everything will be numb for awhile. I'm thinking that I should get on my horse as soon as the holes heal up a bit - and not tell my doctor.
                                        You are what you dare.

                                        Comment


                                        • Glad to hear the surgery went well. Still jingling for you!

                                          P.
                                          A Wandering Albertan - NEW Africa travel blog!

                                          Comment

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